The PROS and CONS of GILENYA

[WildlifeLVR]

Glad that it's working for you.I'm considering it because I would love to take a pill instead of an IV infusion.

Ty has really worked for me and now that I'm doing Ty every other month it's not too bad.A pill instead of an IV would be awesome.What concerns me is the liver and heart probs.I don't like taking things that are so new.I like to give them some time before taking the plunge.I'll discuss all this with, my Neuiro i January.

Please be careful with the pill.It can be more dangerous than Ty or Gilenia.Stick to condoms.They're safer.

I agree to stay away from the pill! My mom preached me to take it since I turned 18 and now 9 yrs later...I had a Pulmonary Embolism! I can never take the pill again so any medication that requires more than a condom is not for me. After being on blood thinners and off the pill and Copaxone for the last 6 months, I have decided to go back to the daily injections for MS therapy until we know more about this pill or a new one comes out.

[empirerecs]

I started Gilenya about 3 months ago and it seems to be working fine for me. I am bipolar and the docs didn't want even the slightest chance that an interferon would make it worse (there is a very slight chance interferon will increase depression). I had a choice between Gilenya and Tysabri - my neuro supports both, says they are both very good medications.

I weighed the differences and had all the preliminary tests for both and I passed all the tests for both. I decided on Gilenya because it's a pill and with the symptoms of the PML with Ty being so close to some of the bipolar issues I didn't want to take the chance - if I didn't catch the changes in time it would be too late to stop the PML from getting worse. The PML scared the heck out of me. Ty will be my last resort if I ever need to change again.

The testing for Gilenya has been going on a long time - it's "new" but they have done some decent trials. I know 2 people who were in the trials and still on it several years later and have had no problems and no significant relapses. I also think that Gilenya was around before Tysabri, I know someone in the Ty trials and they were done after the people I know in the Gilenya trials. I haven't looked that up though. If you are pretty healthy now, no heart problems, watch what you eat, stay active, etc. you should be fine on the Gilenya. I think any medications we take, MS or others are going to have an effect on the liver functions - OTC pain relievers effect the liver if taken too much - even more so if taken with alcohol.

I would ask the Gilenya nurse if it affects the pill - I just learned that one of my bipolar meds is negated by the pill and the pill negates another - see ya pill! I'd rather not be crazy.

[ms man]

I started Gilenya about 3 months ago and it seems to be working fine for me. I am bipolar and the docs didn't want even the slightest chance that an interferon would make it worse (there is a very slight chance interferon will increase depression). I had a choice between Gilenya and Tysabri - my neuro supports both, says they are both very good medications.

I weighed the differences and had all the preliminary tests for both and I passed all the tests for both. I decided on Gilenya because it's a pill and with the symptoms of the PML with Ty being so close to some of the bipolar issues I didn't want to take the chance - if I didn't catch the changes in time it would be too late to stop the PML from getting worse. The PML scared the heck out of me. Ty will be my last resort if I ever need to change again.

The testing for Gilenya has been going on a long time - it's "new" but they have done some decent trials. I know 2 people who were in the trials and still on it several years later and have had no problems and no significant relapses. I also think that Gilenya was around before Tysabri, I know someone in the Ty trials and they were done after the people I know in the Gilenya trials. I haven't looked that up though. If you are pretty healthy now, no heart problems, watch what you eat, stay active, etc. you should be fine on the Gilenya. I think any medications we take, MS or others are going to have an effect on the liver functions - OTC pain relievers effect the liver if taken too much - even more so if taken with alcohol.

I would ask the Gilenya nurse if it affects the pill - I just learned that one of my bipolar meds is negated by the pill and the pill negates another - see ya pill! I'd rather not be crazy.

MS sucks putting us through all these changes!If Gilenya is working for you then continue it.I'm healthy as a horse but,oh, I have MS.Go figure. Tysabri has been working for me for the three years I've been taking it so I'll stay with it.PML scares the hell out of me but I've got to keep the faith and stay with Ty.

[empirerecs]

MS Man -

I think it's a little bit of mind over matter - if you believe it's going to work, have that faith, than it's going to give you relief - whether it's a DMD or the natural way. Right now, G is going to work.

I met a woman yesterday and she asked what I do - she told me she was in school to be a paralegal which is what I did before being fired because of the MS so I told her I have MS and am now on disability. Her response was "oh - you look so healthy." Well, I am, except the MS (and bipolar) but it catches up to me at times. But it sucks that it is sometimes a "silent" disease and people can't see it - they think you aren't sick. Oh well, that's MS.

I'm glad Ty is working for you - I have heard good things about it, and as I mentioned, if the G doesn't work, I will give it a try. I'm one who believes in the DMDs, unless they all stop working, then I'll try the natural approach. I just want to continue to feel better as much and as long as I can, as we all do.

[7426sme]

needed this

I've been reading all these threads and am so happy that I did. We all have different stories, but are going through the same things.

I'm so hopeful!

[ms man]

MS Man -

I think it's a little bit of mind over matter - if you believe it's going to work, have that faith, than it's going to give you relief - whether it's a DMD or the natural way. Right now, G is going to work.

I met a woman yesterday and she asked what I do - she told me she was in school to be a paralegal which is what I did before being fired because of the MS so I told her I have MS and am now on disability. Her response was "oh - you look so healthy." Well, I am, except the MS (and bipolar) but it catches up to me at times. But it sucks that it is sometimes a "silent" disease and people can't see it - they think you aren't sick. Oh well, that's MS.

I'm glad Ty is working for you - I have heard good things about it, and as I mentioned, if the G doesn't work, I will give it a try. I'm one who believes in the DMDs, unless they all stop working, then I'll try the natural approach. I just want to continue to feel better as much and as long as I can, as we all do.

Glad that G is working for you as Ty is working for me.My philosophy is 'if it ain't broke don't fix it.'

The day I get PML or Ty stops working I'll give G a shot.

[murrayx2]

White Blood Count

I was on Gilenya for 6 months and I loved it. I was really feeling good. However my blood test showed a count of 20 for the CDC4. My doctor immediately took me off it and put me back on Avonex. I will be taking a blood test next week and hopingly it will bounce back.

[ms man]

I was on Gilenya for 6 months and I loved it. I was really feeling good. However my blood test showed a count of 20 for the CDC4. My doctor immediately took me off it and put me back on Avonex. I will be taking a blood test next week and hopefully it will bounce back.

Glad that Gilenya worked for you ad hope you can go back on it.

[gbugg7777]

GILENYA

HAS ANYONE HAD PROBLEMS WITH THIS DRUG....IVE BEEN ON IT FOR 28 MONTHS WITHOUT ANY PROBLEMS OR EXACERBATIONS ..my lymphocytes dropped to .7 but that was expected

[LindaT5761]

IV's

I am waiting for my car to arrive to take me to today's Tysabri infusion. (Sometimes a car seems like a good precaution when it's really hot out.)

The last 2 months the nurses at the infusion center had a hard time finding a vein on the left side. Today i'm going to ask for the right side & hope it goes well. I've been on Ty for about a year and a half. When my neuro rx'd it, he saId gilenya was still too new. I'm seeing him this month, & will tell him about any iv difficulties.

that's why i am readding this item today. Thanks for all the input!

Linda